MRI on a 6 month baby?

[SidJames]

Can anyone recommend a clinc that can do an MRI on my 6 month old child?

I have concerns about his foramen magnum.

[Sheryl]

I don't know of anyplace that would do an MRI on an infant without a doctor's order, nor should they. (among other things sedation would be required)

 

AFAIK there is nothing that would be wrong with the foramen magnum that would not be accompanied by  unmistakable clinical signs and rare, serious conditions. This is not something one would normally screen.

 

Has the infant been diagnosed with achondroplasia (skeletal dysplasia)? What exactly is it you are concerned about?

[SidJames]

We just got the clinical diagnosis yesterday that our boy is androplastic despite that the tests were taken 4 months ago Sheryl.

My concern about local competence could not be higher so I'm looking now to do as much research as possible & bring that to the table.

 

 

[Sheryl]

Where is the child being treated? As changing that may be better than trying to arrange an MRI on your own. Also, CT would be easier and is more often used  for infants - but regardless any test is only as good as the doctor interpreting it.

 

The most expertise in this in Thailand is to be found at Chulalongkhorn University Hospital and Siriraj Hospital. Both have clinics for pediatric genetic disease staffed by US-trained clinical geneticists.

 

Chula

Assoc. Prof Kanya Suphapeetiporn (US trained - State Univ of NY and Yale)    https://cop.car.chula.ac.th/kanya.s

http://medsci.md.chula.ac.th/staff_profile.php?id=22

 

Prof. Vorasuk Shotelersuk   (US Trained - NIH)

https://cop.car.chula.ac.th/vorasuk.s/?sec=info

http://biomed.md.chula.ac.th/vorasak.htm

                                                                                          

    The first link under each includes their email address

 

Siriraj

 

Prof. Pornswan  Wasant (US Trained - Johns Hopkins)

http://www.si.mahidol.ac.th/th/department/pediatrics/dept_person_detail.asp?ps_id=466

[Sheryl]

P.S. Chula has an after hours clinic, and Siriraj has a private wing, so at both places it is possible to see the top professors privately which will allow for more discussion than is possible in the public channel. Can do that i naddition to getting tretament through the public channel to reduce costs.

 

If yiou can get a letter fi referral from your home hospital care can be free under the 30 baht scheme

[SidJames]

We're off to see a specialist at the Gleneagles in Singapore & I was thinking outside the box.

I thought that getting MRI's & xrays done here then getting the right person to interpret them would save on costs.

We saw the pediatric geneticist specialist at one of the major big name hospitals in Bangkok & was completely underwhelmed at the advice that we were given.

I can't thank you enough for these links, John Hopkins is the world's leading hospital for ACH.

[Sheryl]

I can't imagine being able to do an MRI on an infant without heavy sedation. A CT possibly. You could ask this place   re CT on an infant http://www.mrithailand.com/index.php

[SidJames]

You're correct about the MRI on a baby because he would have to be injected with a dye & there is a chance of a reaction plus he'd have to be sedated.

We're going get a CT scan instead.

Singapore was a blow out (an expensive one at that).

Prof Wasant is a Downs specialist & the other two doctors are not returning my emails.

I've emailed the university but no luck there either.

I've emailed the Genetic Society of Thailand to no avail.

I've also emailed Yale Medical mag to see if they'll hook me up with Dr Suphapeetiporn as they did a piece on her a good few years ago.

I've emailed the Siriraj & asked if they had any ACH specialists but they don't & instead recommended that I go to see the doctor that we saw in the first place & in whom we were so disappointed.

We're getting less guidance for him than we did for previous healthy children.

It's very very frustrating.

[Sheryl]

2 hours ago, SidJames said:

You're correct about the MRI on a baby because he would have to be injected with a dye & there is a chance of a reaction plus he'd have to be sedated.

We're going get a CT scan instead.

Singapore was a blow out (an expensive one at that).

Prof Wasant is a Downs specialist & the other two doctors are not returning my emails.

I've emailed the university but no luck there either.

I've emailed the Genetic Society of Thailand to no avail.

I've also emailed Yale Medical mag to see if they'll hook me up with Dr Suphapeetiporn as they did a piece on her a good few years ago.

I've emailed the Siriraj & asked if they had any ACH specialists but they don't & instead recommended that I go to see the doctor that we saw in the first place & in whom we were so disappointed.

We're getting less guidance for him than we did for previous healthy children.

It's very very frustrating.

Sorry to hear this.

 

I suggest you try making an appointment with  Prof. Suphapeetiporn or Prof. Vorasuk through the Chula after hours clinic. Whichever of them is available but of the two, Prof. Vorasuk has published specifically on achondroplasia.

 

You could also try calling both BCH and St louis hospitals to see if either of them have private hours there - a lot of the Profs at Chula do and it is impossible to tell from their websites as they are only in Thai. If they are there it will be in the Peds depts.

 

BCH: 0-2625-9000, 0-2235-1000,0-2760-9000

 

St Louis: 0-2838-5555

 

Have you also considered a trip to your home country? (where is it?)

 

BTW there are someclinical trials underway on a new drug   for achondroplasia,  though they only enroll children from age 5 onward. Already in Phase III. Sites in US, Australia, UK and France.

http://www.biomarin.com/products/pipeline/bmn-111/

http://beyondachondroplasia.org/blogue/?p=7427&lang=en

[SidJames]

Thanks for those Sheryl.

I'll keep swinging until we get somewhere.

I'm trying to convince my other half but we have other small children in school so not so easy to just hop a plane anymore.

I'm trying to set something up for March/April when the main school hols are on

[SidJames]

We eventually got a reply from Prof. Vorasuk Shotelersuk's team & were seen by him.

He only holds surgery once a week on Tuesday afternoons & has no private clinc.

He had a tremendous manner & was very informative.

We had an ultrasound done on his advice & get the results tomorrow re concern of hydrocephalus but we also need the lad tested properly for sleep apnea but haven't had any success finding a place that tests infants only children or adults.

Do you know of any clinics Sheryl?

[Sheryl]

https://www.bangkokhospital.com/index.php/en/diseases-treatment/snoring-sleep-apnea-risk

 

appears to, at least they mention indications for infants under the age of 1 year

 

I know they also do it at Siriraj, or at least they have done it for research purposes. Prof Archwin Tanphaichitr in the Division of Otorhinolaryngolog is key contact for this there and has published on both  central sleep apnea and obstructive sleep apnea in infants.

 

I'm glad you finally found the right doctor and were able to get the information you needed.

[SidJames]

I've started emailing various hospitals Sheryl

We got the all clear this morning for hydrocephalus & we're over the moon but a sleepless night was had